Resource Organizations

National Organization for Rare Disorders (NORD) is dedicated to helping the nearly 30 million Americans with rare diseases, and the organizations that serve them, through programs of education, advocacy, research, and patient services.

Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

Advocacy

PPTA News

The article, “How Blood-Plasma Companies Target the Poorest Americans,” by H. Luke Shaefer and Analidis Ochoa, published in The Atlantic on March 15, was unfair to plasma donors as well as to individuals living with rare, genetic, and chronic diseases who rely on access to plasma protein therapies. Plasma donors are due our gratitude and respect, not sweeping negative characterizations.

Highlights from the 2018 IPPC +

Mr. Jan M. Bult, President & CEO, PPTA, opened the well-attended IPPC 2018 by welcoming the more than 300 attendees to Budapest. PPTA thanks its sponsors who help make the IPPC possible every year. Download the IPPC app (available in the Apple AppStore and Android Market/Google Play) for Apple or Android devices) for a complete list of sessions and many of the presentations.

GLOBAL INITIATIVE DRAWS ATTENTION TO RARE DISEASE TREATMENTS +

Budapest, HUNGARY (March 13)– The Plasma Protein Therapeutics Association (PPTA) today unveiled its new global initiative, “How Is Your Day?” –Making the difference with plasma proteins, in conjunction with the annual International Plasma Protein Congress. “How Is Your Day?” will focus on differentiating these unique therapies from traditional pharmaceuticals and building awareness of the value they provide for people living with rare, life-threatening, chronic, and genetic diseases.